Introduction

The proportion of individuals who receive a diagnosis of dementia has increased worldwide [1] due in part to greater awareness and acceptance of dementia. Individuals with cognitive impairment and their families place a high value on understanding a dementia diagnosis and knowing the specific etiology (e.g., Alzheimer disease [AD]) [2]. They describe a “right to know” their diagnosis [3, 4] and express benefits of receiving a formal (i.e., specific) diagnosis including understanding what is happening [3], validation that something is wrong [5, 6], improved family patience with the person with dementia [5], obtaining appropriate medical management and connecting the individual and their family to resources [3, 6], and options to participate in clinical trials [7]. Based on some of these benefits, dementia diagnosis disclosure can result in improved quality of life (QoL), decision-making and future-planning [3–5, 8], as well as reduce anxiety for some patients and care partners [9].

Though individuals with dementia or cognitive impairment have expressed a preference to know their diagnosis and many benefits are identified, research suggests that clinicians often do not disclose diagnoses of AD or AD-related dementias (ADRDs). The Alzheimer’s Association found that only 45% of individuals living in the U.S. with symptomatic AD and 27% of individuals with other dementia-related illnesses received a diagnosis [10]. A systematic review of research regarding practices for communicating a diagnosis of dementia identified that only 34% of primary care physicians and 48% of specialists routinely tell the person with dementia their diagnosis [11]. Revealing the diagnosis to care partners/caregivers is more common– 89% of primary care physicians and 97% of specialists give a diagnosis to care partners/caregivers [11]. When this topic is discussed, some clinicians use euphemistic terms such as “memory problems” rather than formal diagnoses [11–13].

Reasons for non-disclosure are complex and likely relate to patient-, caregiver-, and clinician-level factors. Interactions between clinicians, patients, and family members are made more challenging due to the presence of cognitive impairment [14–16] and the involvement of a third person in the interaction such as a family caregiver (i.e., the dementia triad) [14, 15, 17, 18]. This can be both helpful and unhelpful for clinicians [18, 19]. For example, it may be helpful when the third person can help to facilitate patient understanding or provide support for the patient [19] but may be unhelpful when the third person engages in frequent interruptions [19, 20] or has preferences that conflict with the patient’s preferences [18, 19]. Other ecological issues also create barriers to receiving or giving a diagnosis, such as limited access to specialist or support services [16]. In the U.S., clinicians have reported a lack of local dementia specialists to meet demands, which means primary care physicians (PCPs) are often responsible for diagnosing and treating dementia [16]. Yet PCPs may be insufficiently trained to properly make and communicate the clinical diagnosis to individuals with cognitive impairment and their families [7, 21]. Only about 60% of PCPs in one survey reported feeling fully comfortable diagnosing dementia [16]. Clinicians’ low confidence in their ability to diagnose dementia has also been found in other studies [12, 21, 22]. This may be associated with limited training in this area, as about 65% of primary care physicians reported “very little” and 25% reported having no residency training in dementia diagnosis and care [16].

Additional reasons for clinician reluctance to make or disclose dementia diagnoses have been identified and may include clinicians not wanting to give a diagnosis that isn’t definite [12], perceived lack of benefit of an early diagnosis [21, 23], concerns regarding emotional distress associated with the diagnosis [23, 24], the perception that the patient does not want to receive a diagnosis [12, 23] or will be unable to understand the diagnosis [23, 24], therapeutic nihilism [21–24], and concerns about dementia stigma [12, 21–24]. Clinicians may also believe that costs of delivering a diagnosis outweigh benefits [23, 24], there is insufficient remuneration for provision of dementia care [22], or that diagnosis will strain medical systems [21, 23].

Challenges in giving a dementia diagnosis may be further exacerbated by cultural or language barriers, although triadic barriers seem to exist across cultures. In a 2018 study using interviews to assess the process of diagnosing dementia in immigrant groups, clinicians described challenges in assessing and diagnosing dementia due to limited experience, language barriers, lack of continuity, and cross-cultural differences [25]. Primary care physicians in Japan described choices in dementia diagnosis disclosure including who they target (patient and/or care partner), clarity of diagnosis and prognosis (disclose clearly, use euphemistic terms, versus no disclosure), and case-specific disclosure adjustments [26]. Primary care physicians who were highly comfortable with the disclosure process were more likely to discuss the diagnosis with both patients and families, whereas physicians who were uncomfortable tended to refrain from giving dementia diagnoses and emphasized negative aspects of dementia [26].

Although barriers to disclosing a dementia diagnosis have been identified, several gaps in the literature still exist. First, studies have often described barriers to dementia disclosure, but less is known about other aspects of the disclosure interaction (e.g., clinician recommendations or current strategies used) [27]. Second, studies that have examined the disclosure interaction more broadly (i.e., not just barriers to communicating a diagnosis) have often focused on clinical observations [18, 20]. While this is helpful in describing aspects of the interaction, clinicians’ perspectives may be missing. For example, a 2012 study analyzed real-time encounters involving six clinicians and found that diagnosis disclosure involved a series of alternating dyadic exchanges (physician-patient, physician-caregiver), but did not query clinicians regarding approaches or experiences [20]. Similar research assessed patient and companion experiences of diagnosis disclosure through post-encounter interviews but did not interview the participating clinicians [6]. A 2013 systematic review found that most studies assessing clinicians’ perspectives on disclosing a diagnosis were quantitative (e.g., mail surveys) [27]. This review, as well as a more recent review [2], concluded that more research was needed regarding dementia diagnosis disclosure to better understand what health professionals should bring to the diagnosis revelation process.

Given limited recent research describing clinicians’ experiences disclosing a dementia diagnosis to individuals and family members, this study sought to better understand the diagnosis disclosure process from clinicians’ perspectives including individuals with diverse backgrounds. The study started with research questions (RQs) regarding clinician experiences in (1) giving a dementia diagnosis and (2) learning how to give a dementia diagnosis (to better understand how clinicians developed their communication practices):

1. RQ1: What communication practices do clinicians report using when giving a dementia diagnosis to individuals with dementia and their families?
2. RQ2: How did clinicians learn to give a dementia diagnosis?

Methods

This study is the first step in a larger, ongoing, multi-stage study to investigate the experiences of giving and receiving dementia diagnoses among three groups: clinicians, individuals with AD or an ADRD, and caregivers. Methods are reported using the Consolidated criteria for Reporting Qualitative Research (COREQ) Checklist [28] (S2 File).

Results

Participant characteristics

Fifteen clinicians with different backgrounds participated in interviews (Table 1). Of the five individuals with a primary focus in family medicine/geriatrics, two trained solely in family medicine, one trained in internal medicine with a geriatrics fellowship, one trained in family medicine with additional training in geriatrics, and one trained as a geriatric nurse practitioner with additional certification in psychiatry. This was the only non-physician participant with specialties in family medicine/geriatrics or neurology. Of the neurologists, one had additional training in palliative care and two described a particular focus on behavioral neurology/memory disorders. The participating psychiatrist was trained in general and geriatric psychiatry. Eleven of the participants were associated with an academic medical center. Because of the range in specialties and training, some clinicians provided on-going care to patients after making a diagnosis, while others primarily engaged in a single consultation (e.g., to make and disclose the diagnosis), and some clinicians engaged in both types of interactions. Average interview duration was 25 minutes, 22 seconds (range 14 minutes, 13 seconds to 43 minutes, 24 seconds). Thirteen participants were native English speakers. The two Hispanic participants reported Spanish as their native language, but they were fluent Spanish/English bilinguals.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Participant demographics.

https://doi.org/10.1371/journal.pone.0267161.t001

Discussion

For this study we interviewed 15 Florida-based clinicians with a diversity of backgrounds, including gender, race/ethnicity, specialty, and setting (e.g., academic versus not). When describing approaches utilized to communicate a diagnosis of dementia, participants reported using one or more of the five communication practices thematically identified in the results: (1) patient and family-centered communication; (2) tailoring communication to the patient/family; (3) using deliberate choice in diagnostic terms; (4) positively framing information related to the diagnosis; and (5) providing patient and family education. When these approaches were learned, it was most commonly through formal training (particularly observation of senior clinicians) or self-education (e.g., YouTube videos, practice).

Participants described using patient- and family-centered communication practices involving family members, checking patient/family understanding, and using empathic communication. Integrating the individual with dementia and family members into true triadic communication can be challenging, with many encounters simply representing a series of dyadic (clinician-patient, clinician-family) exchanges [20]. Clinicians in our study described trying to include and balance the interaction between the individual and their family members (i.e., the dementia triad). Clinicians described doing this by establishing rapport during the dementia diagnosis disclosure process, which is an important communication practice identified by individuals with cognitive impairment and family caregivers of individuals with dementia [42]. Building rapport can result in greater trust, comfort, and honesty with clinicians, as well as alleviate patient anxiety [43]. Some clinicians in the current study described meeting separately with individuals with dementia and their caregivers. This approach has been endorsed by individuals with cognitive impairment and caregivers [42]. Reasons clinicians in our study gave for not doing this included time constraints or feeling that they were not respecting patient autonomy by meeting with caregivers separately. Interestingly though, some clinicians who described meeting with the individual and family separately only reported asking the family members about their communication preferences for disclosing a dementia diagnosis, whereas other clinicians reported asking both the patient and family members’ preferences. In addition to including caregivers as emotional support for the patient [18], caregivers can also function as key members of the care team for the individual with dementia [42]. However, clinicians need to simultaneously manage the different information needs of the individual with dementia and caregivers/family members and avoid colluding with family members [44, 45]. In other words, clinicians must balance patient and caregiver needs while keeping the focus on the individual and allowing for patient autonomy when possible.

Checking understanding was a common practice reported by clinicians, which is a key part of good communication practices in medicine more generally [46] and in the context of communicating a dementia diagnosis [44]. Clinicians described different ways of checking understanding, such as asking patients to repeat back information communicated by the clinician (i.e., the teach back method), or directly asking the patient if they understood. Clinicians also used empathic communication, which involves understanding how another person is feeling and communicating that understanding [47]. In the current study, clinicians described sensitivity toward the challenges and emotions associated with receiving a dementia diagnosis. In some instances, using empathic communication was described by clinicians as a method to build rapport with the individual and family members. This is consistent with the available guidance for dementia diagnosis disclosure, which suggests that clinicians should explore the meaning of the diagnosis during the encounter and the emotional response [44].

Although tailoring communication to the patient and family is an aspect of patient- and family-centered communication practices, it was coded as a separate theme because participants described several behaviors specifically tied to the tailoring process. Some clinicians reported asking individuals with dementia and/or family members about their communication preferences prior to giving the diagnosis. Soliciting preferences for dementia diagnosis disclosure in advance is a recommended strategy [44], but was not described by all participants. Clinicians in the current study also reported tailoring communicating based on patient and family characteristics and their reactions in the moment, such as waiting to observe how individuals react or process the diagnosis. When tailoring toward the patient and family background, clinicians’ considerations included the patient’s cognitive abilities, family support, patient and caregiver educational background, and prior knowledge about dementia as well as elements relating to implications of the diagnosis (e.g., anticipated reaction, stigma). This tailoring is in line with guidance suggesting that clinicians should explore expectations and ideas of the person with cognitive impairment [44, 48], account for prior knowledge and perception of a problem [45, 48], tailor information to patient preferences and ideas [44, 48], and be aware of family relationships [45] during disclosure conversations. Prior research suggests that clinicians commonly tailor dementia disclosure based on patient circumstances including awareness of symptoms, dementia severity, and family support [11, 26].

Some clinicians described tailoring their communication to cultural background. This is an important contribution to the literature, as this area is generally understudied. Some studies suggest that individuals identifying as Hispanic or black have missed or delayed dementia diagnoses and are often diagnosed at later stages (e.g., with worse cognitive function and more functional impairments) compared to individuals who identified as non-Hispanic white [49]. Additionally, while fewer than half of individuals with dementia reported being told their diagnosis by a physician regardless of background, proportions were lower for Hispanics and blacks than non-Hispanic whites [50]. Reasons for this are likely complex and include a lack of guidance on how to disclose a dementia diagnosis in a manner that is culturally relevant in different racial and ethnic groups. Future research should expand upon how the patient/family background, culture, and languages of the participants in the triad may impact dementia diagnosis disclosure and how to adapt communication practices can be tailored to be more to be more culturally relevant.

Some clinicians–including both non-specialists and specialists–reported using deliberate choice in diagnostic terms during the disclosure process by using general terms such as “dementia” or “memory disorder” or specific terms (e.g., “Alzheimer’s disease”). Reasons for using general terms included the clinician not feeling they had seen the patient long enough to give a more specific diagnosis, either not having enough time in the clinical encounter or not having a long-term relationship with the patient. Further reasons included lack of expertise, not wanting to distress or confuse the patient, or concerns regarding stigma. Irrespective of chosen vocabulary, clinicians noted confusion surrounding dementia and AD terminology, as well as the challenge that definitive diagnosis isn’t currently possible in life. Some clinicians advocated for use of specific language regarding dementia etiology–while acknowledging limitations in current diagnostic approaches–to reduce patient and family uncertainty and connect them to appropriate resources. The mixed approaches in the current study add to the existing literature on why clinicians may use certain language (i.e., general or specific). For instance, a 2019 systematic review suggesting that both specialists and non-specialists use euphemistic terms such as “memory problems” or use the term “dementia” without saying “Alzheimer’s” [11]. Often this was driven by desiring to avoid stigma, loss of hope, or psychological distress [11]. Notably, guidance on dementia disclosure advises that clinicians should explicitly name the diagnosis [44, 48]. This recommendation for explicitly naming the diagnosis can help individuals with dementia and their family plan for the future and access appropriate treatments [7, 44]. A specific, clear diagnosis can also improve quality of care, allowing physicians to “better manage an individual’s comorbid conditions and avoid prescribing medications that may worsen cognition or function” [7]. Family members want to know what an individual with dementia may experience in the future, beyond the diagnosis, and how this may impact them as caregivers [2]. The juxtaposition of reasons to give a specific diagnosis with clinician reluctance also underscores the importance of soliciting patient and caregiver disclosure preferences (also described in our theme tailoring communication to the patient and family) so that discussions are patient-driven rather than driven by clinician preferences [44].

Study participants highlighted the importance of positively framing information about the dementia diagnosis and described doing so by instilling hope, focusing on healthy behaviors, and managing symptoms to improve or maintain the patients’ quality of life. Our findings regarding positively framing the diagnosis are consistent with approaches reported in other studies (“putting a positive spin or frame on information, such as by focusing the discussion on treatments and services”) [11], as well as suggested disclosure approaches like fostering hope [44], focusing on remaining function [48], and reframing the disease as a challenge of achieving the best life possible despite limitations [48].

The last theme described using communication to educate patients and families about the dementia diagnosis, including explaining the underlying dementia cause, allotting appointment time to answer questions, providing educational resources, and following up after the diagnosis appointment. These practices are consistent with available guidance, including educating patients and caregivers regarding the diagnosis and how symptoms relate to an underlying brain disease [45, 48, 51], how the disease will affect the person in the future (prognosis) [44, 45, 48], what pharmacologic and non-pharmacologic treatment options are available [44, 45, 48], realistic expectations for treatment [48], where to find support [44, 45, 48, 51], and directing the caregivers to available resources [48]. However, providing education must be balanced with not giving too much information in one session [44, 48]. This underscores the importance of scheduling follow up visits for additional discussion after disclosure [45, 51] and/or using multiple visits for the dementia disclosure process [44, 48, 51].

Lastly, participating clinicians reported that they learned how to give a dementia diagnosis through formal training or self-taught methods, such as through gaining clinical experience or independently seeking training resources like YouTube videos. Although formal training was most common, this was usually observational in nature (e.g., observing mentors in the disclosure role). Only one clinician described learning formal techniques to help deliver difficult diagnoses, and reported adjusting the SPIKES approach for breaking bad news [52] to disclose a diagnosis of dementia.

Summary approaches for disclosing a dementia diagnosis

Study participants largely adhered to the approaches consistent with published guidance for disclosing a dementia diagnosis (Table 2) [44, 45, 48]. These were consensus-based and published over ten years ago (2007–2010), but they remain largely applicable to practice, with the notable caveat that they provide no guidance on how to incorporate and utilize culturally sensitive approaches to communicate a dementia diagnosis to diverse populations.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 2. Approaches for communicating a dementia diagnosis.

https://doi.org/10.1371/journal.pone.0267161.t002

As mentioned above, one clinician reported adjusting the SPIKES approach for breaking bad news [52] to disclose a diagnosis of dementia. This 6-step format (setting–arrange appropriate location, perception–check with the patient knows, information–ask what the patient wants to know, knowledge–share information in small portions, empathy–expect emotion and respond empathically, strategy/summary–recap important points and outline next steps) covers many of the best practices suggested for dementia disclosure (Table 2). Perhaps unsurprisingly, researchers recently suggested adapting the protocol to create SPIKES-dementia (SPIKES-D) approach [53]. This could be used to facilitate either formal teaching regarding dementia disclosure or self-education, particularly as the SPIKES approach is familiar to many clinicians.

Conclusion

Florida-based clinicians representing a diversity of backgrounds described dementia disclosure practices largely consistent with prior guidance and approaches to giving bad news more generally [44, 48]. The results of this study highlight the disagreement about optimal approaches to dementia terminology and whether clinicians should use terms such as “Alzheimer disease” during the dementia diagnosis disclosure process. Importantly, not all clinicians mentioned soliciting patient preferences regarding disclosure, so it is likely that some clinicians asked for patient preferences and let them guide the discussion while others based the decision to use (or not use) specific terminology based on clinician preferences or opinions on how the patient and family might respond. The current study focused on clinician self-reported practices and experiences relating to disclosure of dementia diagnoses. A more comprehensive understanding of the diagnosis disclosure process will require elucidating caregiver and family experiences, as well. Additionally, interviews with clinicians caring for under-represented groups suggested that culture/ethnicity can have an impact on the diagnosis disclosure process and on how the patient and their family understand and receive the diagnosis [54–56]. Therefore, more research is needed regarding this finding and best practices for individuals from different backgrounds. Further research in this area is warranted, with the goal of improving dementia disclosure guidance in ways that address cultural differences, as well as balancing a clear diagnosis with patient preferences for diagnostic communication (e.g., general, or specific language).

Supporting information